Surgeon appointment tomorrow

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ucfree
Regular Member


Date Joined Oct 2005
Total Posts : 291
   Posted 3/17/2009 9:41 PM (GMT -6)   
Hi everyone,

I've been a silent reader of this forum for a very long time and between the UC, Chron's and now the Ostomy forum, I've learned a LOT. Thank you everyone for sharing so much and making it a smoother ride for people like me.

My journey is a complicated one, as almost everyone here ... I wanted to share it and also ask some brief questions to comfort myself of the fact that I am making the right decision moving forward and not "giving up".

I was diagnosed with Ulcerative Colitis about 10 years ago when I was in college (I am 31 now) and it started off really bad. Uncontrollable bleeding, lots of prednisone, asacol etc ... we all know the drugs. Fast forward to today, my body has become steroid dependent. I am developing signs of osteopenia and I have tried every drug under the sun. I'm on Immuran (150mg / day), Lialda (4 pills / day), Prednisone (40mg / day). I had 3 rounds of Remicade which SEEMED to help but I had terrible leg pains and body aches. After battling the insurance company to get Humira approved, I tried the loading doses and I've flared up again.

My GI had recommended surgery almost 6 months ago and I considered it, even to the point where I met the surgeon and almost scheduled the surgery date. I chickened out and thought I could beat this ... I tried Acupuncture, Chinese herbal medication, Homepathy, Aurvedic medication .... ANYTHING and EVERYTHING. Everything seemed to help in the beginning but I still have diarreah and when I come off the steroids, the bleeding.

So now, after getting 2 other GI opinions on the matter and all of them being the same 3 for 3 for surgery (that actually rhymed :-)), my wife, mom and myself have decided to move forward with the surgery. We are meeting with the surgeon tomorrow to possibly set a surgery date.

The disappointing feeling about this is that I feel like I am giving up, like I did nto try hard enough to '"cure" myself :( Is this the case? I've spoken to so many people, read so many storied about how after the surgery, life is quite amazing. Almost 100% fold. I have some great news and that is .. my wife is pregnant, 2 months in. I want to be able to run around with my children, watch them grow and be able to keep up with them. I also don't want to be this sick that my wife has to take care of me and the child alone :-/

I have a great job, very understanding management. I am lucky, especially in this economy. I am good at what I do, and sometimes I believe that if I did not have this disease I could be SO much more. Maybe that is one of the reasons I am giving into this surgery.

I live near the Cleveland Clinic Florida and my surgeon's name is Dr. Eric Weiss. Any input on him as a surgeon, or the facilities is welcome please.

Any questions I should be asking? I know they want to do the J-pouch surgery, which sounds great once there are no complications. I know this is a serious surgery so how can I not expect any complications?

My thoughts are, I'm young enough right now, my case isn't as severe ... I can recover quickly from this and be there for the birth of my first child :-) (Oh I cannot wait for that day!).

I used to box, in college, I would love to be back in shape again and be off all of these medications.

More than anything else I think I just need some words of encouragement, and someone to listen to my story. We all suffer .... but at the end of the day I thank God for this, because it would not have made me the person I am today.

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 3/17/2009 10:34 PM (GMT -6)   
Ok first, you are NOT GIVING UP!!! In fact you are BEATING this disease!!! you are literally taking your colon out with the trash!
I see alot where people who are totally anti surgery call surgery "giving up" and not doing all they can to keep a diseased part of their body thats literally eating them up. That just makes me sooo mad, ok sorry, mini rant over, back to you, lol And all those meds that people are trying are doing so much damage to your body, and personally i was just always waiting on them to quit working.

go ahead and do it while you are young! And trust me being better is SOOOO great!!! It will be 2 years April 17th since i had my surgery, and before that i couldnt even play with my son at all for more than a few minutes without being worn out!!! Today, I chased two 3 year old and a 4 year old for 12 hours, outside for probably 7 of those, running and all kinds of stuff, its after midnight now, and i am still going!
If nothing else good comes from your surgery, your child will have you healthy to be able to do anything and everything they want to do with you, and you want to do with them!
The defining moment that made me choose surgery, was watchign my son go off to play on the beach with my family, and i was stuck in the house, just praying mystomach would settle down long enough that i could play with him!

Anyway i had UC for 8 years before i had surgery, and i should have gotten that stupid colon out the day i first saw blood! You said you have been reading, so you know that we all say that the minute you wake up from surgery you feel better, you feel clean! Now i opted for a perm ileo, i didnt want two recoveries or the chance of complications with the pouch later. Just my opinion, lots and lots of people have j pouches and have wonderful luck and love them.
Either way you go, you are still cured!
Oh and you can go back to boxing, just keep your stomach covered i do some wrestiling (not the real kind just with the kids and one of my guy friends (not like THAT, lol) we all love to play rough!)
Anyway, it will be awesome after surgery you will be able to do whatever, whenever, eat whatever, whenever and NOT worry about where bathrooms are!

Bennie
Veteran Member


Date Joined Nov 2006
Total Posts : 550
   Posted 3/17/2009 10:50 PM (GMT -6)   

Welcome uc-kp! You're right. This is an extremely hard decision to make. My daughter had the surgery in July (and the reconnect in November). For her, it was the best decision. She had 3 huge flares. Steroids would get her into remission and the other meds would keep her there for a short time. The steroids would do a number on her (luckily no osteo problems). She is a senior in high school, having a truly great, fun year. Looking forward to college.

Things to discuss with the surgeon:
Laparoscopic or full incision? My daughter's surgeon only did full incision. She was fine with it and her scars are not terrible. The surgeon did a great job.

What type of pain meds will you get? The surgeon preferred to have my daughter have an epidural. That along with the PCA (patient controlled analgesic?) worked well.

Have the surgeon talk you through an "expected" surgery and recovery. How long will the surgery take (my daughter's step 1 was almost 6 hours). What type of recovery does he expect? How long in the hospital? What can you do when you get home?

Will you have a 1, 2, or 3-step surgery? My daughter had 2 steps. The first one was to remove the colon and create the j-pouch. Then she had a temporary ostomy for 4 months (it could have been 3 but she wanted to march in homecoming). The 2nd step was to reconnect the j-pouch.

What type of complications does he see you can have? My daughter had no complications. Some people find it easier to get up and walk after surgery. She had more difficulty. Loss of energy and slower. But she didn't care. She figured it was summer and she had nothing to do anyway.

Where will your ostomy be placed? You also may want to see the appliance ahead of time. My daughter saw drawings of what the surgeon would do but definitely didn't want to see any real pictures. She also didn't want to see an ostomy appliance until afterward. I did research to see what would happen and what everything would look like. A therapist told me my daughter's reaction was fine and not to worry about it. The therapist was right.

One possible issue for my daughter is that there is a chance of infertility in women with j-pouch surgery. We tried to discuss this as much as possible (pros and cons). She figured in the long run that she would rather be healthy and have a child (either naturally, with fertility help, or adoption) and be able to take care of the child than to flare either before, during or after being pregnant. She also didn't want to have to take powerful drugs for the next 60-70+ years.

My daughter was also in remission when she had her surgery. The surgeon said her recovery would be faster because she wasn't sick going into surgery.

Having a great support system, I think, is also important. It sounds like you have that with your family.



--Mom of bratcat (17 years old) and nonamejames (20 years old)--
Daughter bratcat was diagnosed with pancolitis October 2006
Flared Fall 2006, Fall 2007, Spring 2008
Asacol, Rowasa, hydrocortisone enemas, prednisone, 6-mp, Remicade
7/3/08-Step 1 j-pouch surgery and no more meds!
11/10/08-Step 2 reconnect!
 
Son nonamejames was diagnosed with Crohns in Spring 2008
Asacol, Pentasa, 6-mp

Post Edited (Bennie) : 3/17/2009 10:58:56 PM (GMT-6)


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 3/18/2009 9:15 AM (GMT -6)   
i didnt think to mention this, men can, rarely, have a problem with infertitly too, and there was a man on another site who went to a sperm bank before his surgery. Sorry i know thats graphic and gross, and maybe TMI, but he did it just in case he did up sterile he could still have children.
Thats a really really really rare thing for men though.

jblue65
Regular Member


Date Joined Jan 2008
Total Posts : 381
   Posted 3/18/2009 10:49 AM (GMT -6)   
UC-kp-
I just had surgery with Dr. Weiss at CC last Friday. Got home yesterday--- dealing with some pain and other issues but otherwise ok. The surgery was successful and I have 2 more surgeries- Dr. Weiss is doing 3 steps feels that is the best for my case.

I have two children and the little one has only know me sick--- I have so much because of this disease.

I know I have lots more to go through , but I am hopeful that in a few months I will be soooo much better.

Bennie-
I am so glad your daughter is doing well and enjoying her senior year. It gives me hope that in a while I will be up an running.
Jackie, 43
Pancolitis, DX October 06

Lexapro, Synthroid, Protonix,
Tapering prednisone from 40 mg


Surgery March 13th- Total Colectomy
Jpouch surgery to be done in 3 steps


moreglorydays
Regular Member


Date Joined Feb 2009
Total Posts : 38
   Posted 3/18/2009 11:16 AM (GMT -6)   
uc-kp, welcome. Because of UC I almost missed my daughter's wedding. I had my first flare up 21 years ago, and cleared it up with Rowasa enemas. Went on with life symptom free for 20 years, and then had a flare up that eased up on its own with restricting my diet to low residue, and then was put on asacol. The next flare up was about 1 year later - and ended up in the hospital 19 days almost missing my daughter's wedding. They had me on steroids in the hospital, which I wasn't responding to, and then had me start on remicade. Things got better, was on steroids, remicade and asacol. Had an allergic reaction to remicade and was switched to Humira. Was only using Humira when the next flare up hit - 6 months later. When my GI suggested surgery, I felt like the bottom of my world fell out. He said if no surgery we could try Imuron, but I would have to be on Humira, steroids and Imuron for a while. I wanted to be drug free. I did not want another flare up and drug failure. I read that people felt so much better after having this surgery, and I wanted my life back. I had my surgery Feb. 19th. I am still recovering, but like my husband said today, at least I am not running to the bathroom every five minutes! It is a huge decision, but I couldn't live like that anymore. I have a permanent Ileo, as I am not a fan of surgery, and didn't want to deal with adjusting to a j-pouch. Good luck with your decision. This forum is a God-send.
scheduled for permanent ileostomy surgery 2/19 proctocolectomy with permanent ileostomy 2/19
tried asacol, rowasa, remicade, humira
currently on 40 mgs.10 mgs  5mgs. prednisone, 20mgs and tapering every ten days
51 years young


nene205
Regular Member


Date Joined Jun 2007
Total Posts : 302
   Posted 3/18/2009 1:02 PM (GMT -6)   
Don't feel like you have failed to "cure" yourself. You sound like me twenty- so years ago. Having a type A personality didn't help me either. I thought I could control UC or else. That thought almost caused me to develop cancer. When dysplasia was found in my colon, I had a change of mind--real quickly. Listen to your doctors. As young as you are, you shouldn't have any big problems. Just think how you will be better able to enjoy playing with the baby when you feel better. :o)

ucfree
Regular Member


Date Joined Oct 2005
Total Posts : 291
   Posted 3/18/2009 2:13 PM (GMT -6)   
April 7th :-)

You guys are all awesome and I look forward to the support I have received here. I'll keep everyone posted and now I'm looking forward to being cured!

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 3/18/2009 4:50 PM (GMT -6)   
So that's your surgery date?
AWESOME!!!
Now you can start counting lasts, lol.
Like this will be the last such and such i ever do while sick!

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 3/18/2009 6:00 PM (GMT -6)   
Wow!  Good for you, just a couple more weeks...I'm one of those that said I should have done it SOONER!!! 
 
Are you planning for a J-Pouch or permanent ostomy?  There is another site: jpouch.org that can help with those questions or uoaa.org for ostomies...but we are always here to help!  Don't be a stranger:)

And, while I cannot vouch for the Florida branch, I've had all but one of my surgeries at the Cleveland Clinic in Cleveland...I wouldn't go anywhere else!!  I'll be thinking of you...good luck!

Post Edited (OHIO76) : 3/18/2009 6:04:05 PM (GMT-6)


ucfree
Regular Member


Date Joined Oct 2005
Total Posts : 291
   Posted 3/18/2009 8:15 PM (GMT -6)   
I'm lucky to have great support :-)
I'm having the j-pouch surgery, in 2 steps. All will be well, God is great :-)

This has been a big decision, one that I know will be a good one for the future.

I'm also walking the CCFA taking steps walk on the 28th in Fort Lauderdale, anyone else going to be there?

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 3/18/2009 8:22 PM (GMT -6)   

Welcome, KP!

I live in Fort Myers and a good friend of mine had her j-pouch surgery done by Dr. Weiss at the Cleveland Clinic. She was very happy with him and the care at the hospital. So, you are in very good hands!

Since surgery is the ONLY cure for UC, you should be proud of yourself for being brave enough to go for it. Life is so much better when you're not sick, and as an added bonus, you won't have to take prednisone anymore. Woo hoo to that! smilewinkgrin

That's great that you already have a date set for surgery. You are doing the right thing and are going to feel amazing by the time your baby arrives in 7 months. Congratulations! :-)


Cecilia
Dx'd Crohn's in '99 at 28. Proctocolectomy and ileostomy in '06.
Disease-free, medicine-free, and very thankful to be healthy again.


jblue65
Regular Member


Date Joined Jan 2008
Total Posts : 381
   Posted 3/19/2009 5:31 PM (GMT -6)   
Yeah for Dr. Weiss. He is very knowledgeable and skilled. His whole team is amazing- the residents and internists. The stoma nurses are awesome also.

I would love to walk--- but I am not up to it yet because of surgery. I am looking forward to next year's walk.

Let me know how the walk goes.

:))
Jackie, 43
Pancolitis, DX October 06

Lexapro, Synthroid, Protonix,
Tapering prednisone from 40 mg


Surgery March 13th- Total Colectomy
Jpouch surgery to be done in 3 steps


ucfree
Regular Member


Date Joined Oct 2005
Total Posts : 291
   Posted 3/23/2009 3:37 PM (GMT -6)   
Hi Jackie,

was just checking in to see how you were doing. :-)
I'm getting a bit nervous now as the date is fast approaching and a bit apprehensive. :-/

Hope you're doing better, and walking about already ...

jblue65
Regular Member


Date Joined Jan 2008
Total Posts : 381
   Posted 3/23/2009 6:03 PM (GMT -6)   
UC-KP
Thanks for asking. Actually I am feeling better. Still on pain meds-- but much less. I went to Target today and walked for about 30 min. That did tire me out. Everyday I feel a tad better. So emotionally I am also feeling better.

I understand about being nervous- is there anything you can take for nerves. I would take this time to plan what yu are taking to hospital . Also, will you have help after the surgery. I am telling you someone around to help with cooking and just picking things for you is so important.

Did you like Dr. Weiss? How did that go?
Jackie, 43
Pancolitis, DX October 06

Lexapro, Synthroid, Protonix,
Tapering prednisone from 40 mg


Surgery March 13th- Total Colectomy
Jpouch surgery to be done in 3 steps


jblue65
Regular Member


Date Joined Jan 2008
Total Posts : 381
   Posted 3/23/2009 6:16 PM (GMT -6)   
UC-KP
Thanks for asking. Today I walked at Target for 30 minutes. I was in pain and tired afterward, but glad I got out.

Everyday, I feel a little better... emotionally dealing with the ileostomy bad-- a bit better.

I totally understand about being nervous. Is there anything you can take for that.
My advice is to get your plan for hospital ready. What you are taking? things like that.

By the way how did it go with Dr Weiss? Did you like him? Are you having a 2 step?

Keep us updated... tongue
Jackie, 43
Pancolitis, DX October 06

Lexapro, Synthroid, Protonix,
Tapering prednisone from 40 mg


Surgery March 13th- Total Colectomy
Jpouch surgery to be done in 3 steps


jblue65
Regular Member


Date Joined Jan 2008
Total Posts : 381
   Posted 3/23/2009 6:17 PM (GMT -6)   
OOPS i posted twice- the first one didn't go through
Jackie, 43
Pancolitis, DX October 06

Lexapro, Synthroid, Protonix,
Tapering prednisone from 40 mg


Surgery March 13th- Total Colectomy
Jpouch surgery to be done in 3 steps


ucfree
Regular Member


Date Joined Oct 2005
Total Posts : 291
   Posted 3/23/2009 7:49 PM (GMT -6)   
Not taking anything for the nervousness ... My appointment with Dr. Weiss went very well. I know I'm in good hands and have heard nothing but good things about him.

We decided a 2 step procedure ... hopefully all goes well. I think the toughest part about this is the bag that has me concerned :-/

Are you healthy enough to come to the walk on Saturday night? Would be nice to meet some of the forum members and chat.

My mom and wife will be there walking with me :-)

ucfree
Regular Member


Date Joined Oct 2005
Total Posts : 291
   Posted 3/23/2009 8:47 PM (GMT -6)   
You were in the hospital for about 5 days right? I was thinking of taking some of my comfortable clothes (although i think they keep u in that gown for a while). I have to have my laptop at least (thank God of wireless at that hospital), the usual, iPod, book maybe .. etc?

Anything else I am forgetting or should be on my list? Should I not even bother with the books? :-)

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 3/23/2009 10:32 PM (GMT -6)   
i would take some comfy clothes. what i did was buy pants, well actually shorts, way too big, i bought 2 or 3x! I wear a medium or a large, lol. And i bought really soft stuff too, not like athletic shorts, i bought the cotton kind.

take some GAS-X with you, or have your dr write a script for you, you will want it,, i promise, lol.
You may want to take a book or some puzzles, or a game boy, something like that. Although honestly i didnt feel like doing much i just laid there most of the time, i liked the peace and quiet!

I'm not sure if you have seen this somewhere, and i may have already told you, but when you wake up from surgery you will have a clear bag on you, and the output at first is gonna be this nasty green glow in the dark stuff that smells like death. Thats just bile. I promise that that will NOT be the norm. Once you start getting to eat and all it will change to a more normal color and it wont smell so bad. Just be prepared, noone told me that and i freaked out!!!
And once you get home you can change to your non see through bags!
Iknow the idea of a bag is daunting and difficult to come to terms with, but really its not bad at all. You dont even think about it after a while, most of the time i forget i have it.
GOOD LUCK!!!

jblue65
Regular Member


Date Joined Jan 2008
Total Posts : 381
   Posted 3/24/2009 1:55 AM (GMT -6)   
I couldn't concentrate on reading but for some reason I get busy doing word searches and crossword puzzles. When my daughter came to visit in the evenings we would do these together. I watched TV and used the computer.

I didn't bring my own pj's just used the gown and a robe when I walked.

I know everyone tells you this--- but walking is soooo important post surgery. I didn;t have to wear those stupid leg pumps as much because the nurses saw how much I was walking.

I agree about the Gas-X idea. I didn;t have any at first and they wouldn't give me any unless a doctor signed off on it. I just had my husband bring me some.

As far as going to the walk--- I just am not up to it yet. I am feeling better though but get tired easily.

The rooms at the Cleveland Clinic are pretty nice when it comes to hospitals. I hope you get your own room. I did and it was great. Don't be afraid to ask for one.
Jackie, 43
Pancolitis, DX October 06

Lexapro, Synthroid, Protonix,
Tapering prednisone from 40 mg


Surgery March 13th- Total Colectomy
Jpouch surgery to be done in 3 steps


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 3/24/2009 5:40 AM (GMT -6)   

There are a couple of things that I would take with me... some hard candy to suck on, like butterscotch or rootbeer, once you get the go ahead for liquids.  They keep the digestive tract active to help to "wake up" the plumbing after surgery.  Also, gum if you'd rather.  Tho personally I think chewing gum causes more gas - like swallowing air.  I'd also take a small notepad and pen to take notes ...  believe me, pain meds do NOT help the memory, and you can also jot down questions you want to ask the doctor too.  I think you could probably stay busy enough with your laptop.  I know I couldn't concentrate on reading a book -- again the meds let the brain wander!  If you have an IPOD, maybe use that to drown out the hospital noises so that you can sleep; maybe a sleep mask ($3) at Walmart, so that the lights that they flip on in the middle of the night to do your vitals won't wake you up.  I just got a sleep mask about a month ago for here at home (I'm in the process of buying curtains for our home) and I LOVE MY SLEEP MASK!!!!

hang in there!  You are soon-to-be disease free! turn


Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


ucfree
Regular Member


Date Joined Oct 2005
Total Posts : 291
   Posted 3/24/2009 9:59 AM (GMT -6)   
Every day I wake up and when I'm about to take my meds I say "X more days until NO MORE meds!!!"
That's what keeps me going :-) and positive!
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